Cystic fibrosis legal information hotline: A reliable resource for the cystic fibrosis community during the pandemic and beyond

ABSTRACT

Background: The Cystic Fibrosis Legal Information Hotline (CFLIH) provides information on legal issues affecting people with cystic fibrosis (CF). Since 1998, it has provided the CF community with confidential information on health insurance, Social Security, employment, and education. Method(s) The CFLIH tracks each call according to the age of the person with CF, the caller's relationship to the person with CF, and the subject matter of the call. Result(s) The CFLIH received 10 870 calls in 2021;63% were related to a person with CF aged 18 and older and 37% to a child younger than 18;55% were from a person with CF, 7% more than in 2020;and 22% of calls came from CF centers. Of the 2444 calls from CF centers, 95% were from nonphysician staff and 5% from physicians. Twenty-two percent were from a parent of a person with CF, and 1% of callers were the spouse or someone with another relationship to the person with CF. Fifty-seven percent of calls were related to Social Security benefits, 9% more than in 2020. These calls were evenly divided between Supplemental Security Income and Social Security Disability Insurance. Sixteen percent of calls were related to benefits and coverage under a private or public health benefit plan 34% of these related to private health benefit plans and 66% related to public health benefit plans. Of the public benefit plans, 53% related to Medicare and 47% to Medicaid. Nine percent of calls were related to CF in primary, secondary, and higher education, 22% more than in 2020, and 18% were related to employment. Conclusion(s) Total calls in 2021 stabilized after a record high of 13 405 in 2020. The surge in calls that began in 2020 was driven by problems caused by the COVID-19 pandemic and continued into 2021. Calls in 2021 exceeded pre-pandemic levels. In 2021, calls related to Social Security were 9% higher than in 2020. The increase in Social Security calls is attributed to persons with CF becoming unable to work because of the progression of CF symptoms, many of whom are not eligible for CF transmembrane conductance regulator (CFTR) modulator therapy. Calls also increased from those whose health had improved with CFTR modulator therapy who sought information about maintaining Social Security or health insurance while returning to work. The increase in Social Security calls is also attributed to an increase in the number of Social Security beneficiaries undergoing reviews of their disability status by the Social Security Administration. Employment calls continued to be higher than pre-pandemic levels. Remote work during the pandemic tended to help workers with CF maintain employment. Return to in-person work raised concerns about workplace safety, reasonable accommodations, and other workplace issues. Loss of employment with reasonable accommodations for CF was a common experience. The CFLIH increased health equity by helping maintain health coverage for vulnerable members of the CF community, which avoids disruptions in coverage and care. During the global COVID-19 pandemic, the CFLIH continues to be a reliable source of information in obtaining Social Security benefits, health insurance, employment, and safe access to educationCopyright © 2022, European Cystic Fibrosis Society. All rights reserved